Evaluation of assessment of caregiver experience with neuromuscular disease : reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy
2020 Translational Pediatrics. All rights reserved..
BACKGROUND: Cerebral palsy (CP) is the most common cause of chronic childhood disability. Caregivers often provide prolonged care over patients' life span, thus measuring the impact of the disease and its treatments on caregivers has become a recent focus in research. The current study aims to present an evaluation of the reliability and responsiveness of assessment of caregiver experience with neuromuscular disease (ACEND) following botulinum toxin injection to relieve spasticity in children with CP.
METHODS: Patients with baseline ACEND scores and at least one assessment following botulinum toxin injection were enrolled. Data on their gender, age, diagnoses, and functional levels (according to The Gross Motor Function Classification System, GMFCS), and ACEND scores were analyzed. Statistical analyses performed included paired t-test and linear regression.
RESULTS: Baseline ACEND scores (117.7±47.7) were strongly correlated with follow-up scores (120.4±49.5) with a coefficient of 0.929 (P<0.001), suggesting the high reliability of the questionnaire. Paired-sample t-test revealed an insignificant average improvement in ACEND of 2.7 (P=0.352). The ICD-10 code and the GMFCS level were found to be significant predictors for baseline (P=0.043, P<0.001) and follow-up ACEND scores (P=0.025, P<0.001). Male gender was a significant predictor for improvement in ACEND scores.
CONCLUSIONS: We demonstrated the reliability of ACEND through strong correlations of scores before and after botulinum toxin injection. In terms of responsiveness, while the burden of care is largely determined by ICD-10 diagnosis and the GMFCS level, changes in care burden are only related to the gender of the patient and the follow-up time interval.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2020 |
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| Erschienen: |
2020 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:9 |
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| Enthalten in: |
Translational pediatrics - 9(2020), 4 vom: 16. Aug., Seite 507-512 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Xu, Nanfang [VerfasserIn] |
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| Links: |
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| Themen: |
Botulinum toxin |
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| Anmerkungen: |
Date Revised 17.04.2022 published: Print Citation Status PubMed-not-MEDLINE |
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| doi: |
10.21037/tp-19-176 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM315248874 |
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| 500 | |a published: Print | ||
| 500 | |a Citation Status PubMed-not-MEDLINE | ||
| 520 | |a 2020 Translational Pediatrics. All rights reserved. | ||
| 520 | |a BACKGROUND: Cerebral palsy (CP) is the most common cause of chronic childhood disability. Caregivers often provide prolonged care over patients' life span, thus measuring the impact of the disease and its treatments on caregivers has become a recent focus in research. The current study aims to present an evaluation of the reliability and responsiveness of assessment of caregiver experience with neuromuscular disease (ACEND) following botulinum toxin injection to relieve spasticity in children with CP | ||
| 520 | |a METHODS: Patients with baseline ACEND scores and at least one assessment following botulinum toxin injection were enrolled. Data on their gender, age, diagnoses, and functional levels (according to The Gross Motor Function Classification System, GMFCS), and ACEND scores were analyzed. Statistical analyses performed included paired t-test and linear regression | ||
| 520 | |a RESULTS: Baseline ACEND scores (117.7±47.7) were strongly correlated with follow-up scores (120.4±49.5) with a coefficient of 0.929 (P<0.001), suggesting the high reliability of the questionnaire. Paired-sample t-test revealed an insignificant average improvement in ACEND of 2.7 (P=0.352). The ICD-10 code and the GMFCS level were found to be significant predictors for baseline (P=0.043, P<0.001) and follow-up ACEND scores (P=0.025, P<0.001). Male gender was a significant predictor for improvement in ACEND scores | ||
| 520 | |a CONCLUSIONS: We demonstrated the reliability of ACEND through strong correlations of scores before and after botulinum toxin injection. In terms of responsiveness, while the burden of care is largely determined by ICD-10 diagnosis and the GMFCS level, changes in care burden are only related to the gender of the patient and the follow-up time interval | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Cerebral palsy (CP) | |
| 650 | 4 | |a botulinum toxin | |
| 650 | 4 | |a caregiver | |
| 650 | 4 | |a reliability | |
| 650 | 4 | |a responsiveness | |
| 700 | 1 | |a Matsumoto, Hiroko |e verfasserin |4 aut | |
| 700 | 1 | |a Hyman, Joshua |e verfasserin |4 aut | |
| 700 | 1 | |a Roye, Benjamin |e verfasserin |4 aut | |
| 700 | 1 | |a Kim, Heakyung |e verfasserin |4 aut | |
| 700 | 1 | |a Roye, David P |c Jr |e verfasserin |4 aut | |
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